Impact of Parkinson's

[zadok459]

I find Parkinson's to be such an involved and multi-dimensional illness. It occupies mind, body and soul - it engages you everyday and in a different manifestation. Between symptoms and side effects is a little break in your day.I feel as if I'm in full time employment in a demanding job. Are there anybody that has the same feeling

[ConnieD]

Yes 100 percent that’s why im in awe of those who work too it is a job unto itself and a difficult one always trying to problem solve. I agree too it is a mind , body, and soul disease.

[zadok459 in reply to ConnieD]

There is something new to overcome each day.. Found that I can go to bed at peace and wake up disturbed, bothered the next morning for no apparent reason.

[ConnieD in reply to zadok459]

I think for me staying positive is important and finding a balance and trying not to be stressed. Faith helps me find peace .Exercise as we all know is key plus a great way to relieve stress!!😊

[zadok459]

I also need to remain positive and therefore I stick to positive people. I walk 2 km early every morning looking at Table mountain in Cape Town. I think friendship and communicating is also important. But every now and then symptoms and the repetitive nature of the illness affects you negatively. In which country and city are you

[ConnieD in reply to zadok459]

I live in Buffalo, NY USA. Cape Town sounds beautiful !! I also agree we need to keep ourselves surrounded by upbeat positive people and if there are negative people keep them at arms length, sometimes they can’t be avoided all together! Laughter is huge I think, the more the better! Get enough sleep, do things you enjoy! Don’t allow yourself to get upset about small things , learn to let go.

[zadok459 in reply to ConnieD]

It's true - the simplest of things can upset you and set you on the wrong path - I must learn to let go. Have you also found that you're trying to control your symptoms with your mind - with no success

[ConnieD in reply to zadok459]

I don’t think I can control them with my mind, in fact for me it’s half the problem. Overthinking it causes stress which makes my symtoms worse but if I can relax or meditate and quiet my mind it definitely seems to help.

[zadok459 in reply to ConnieD]

I tend to overthink,analyze and anticipate - which cause me stress as well. I'm trying to change that - but as a former military man it's been drilled into me to have a plan B and to prepare for the worst. Do you do yoga or do you just meditate.

[ConnieD in reply to zadok459]

I haven’t tried yoga but I know some have found it helps. So far exercise and prayer with meditation helps but it’s something I need to make time for. It takes practice because clearing my mind and not thinking does not come easy for me . I read somewhere that a lot of people with Pd their minds are constantly racing and it’s true for me something I’m trying to work on

[zadok459 in reply to ConnieD]

To revolve things in our minds I think it's something we all do because the symptoms speaks so loudly and I think your brain are constantly sending signals to all parts of your body to check on its status. This makes your mind to race. I'm trying to relax and live in the moment. Do you also find that if you have to attend a function going out or you're going to inter act with people your mind races to prevent symptoms happening in the anticipated event

[ConnieD in reply to zadok459]

Sadly I do find social events more uncomfortable and not as enjoyable as I used to. I become stressed before the social event worrying as to how I’ll be symptom wise and at the event I’m very aware of my symptoms and can become self conscious which only creates more anxiety, it can become a viscous cycle. It’s important to try and just live and forget about it and as you said live in the moment I just haven’t mastered that yet, I’m still a work in progress !

[zadok459 in reply to ConnieD]

Im exactly where you're at -please tell me when you have some progress - so will I. Are you part of a support group? I was invited to join one but I eventually declined. Felt not to be surrounded by many people having the same illness as me but who are stages ahed of me. I like to discus it with a few, like Im talking to you as I feel we are at the same stage experiencing similar symptoms and respond to it similar to me.

[AmyLindy in reply to zadok459]

Me too

[zadok459 in reply to AmyLindy]

Good luck ! It helps to communicate with friends. This site has some interesting people. I'm in Cape Town South Africa where are you?

[parkie13]

Yes I do, lately I've been stepping back little bit. The other thing is nothing seems to make any difference.

[Juliegrace]

This is exactly what it feels like. My world revolves around PD. It is tiresome but inescapable. But, I remain positive and continue trying different things in the hope of remaining as productive as possible for as long as possible.

[zadok459]

I have accepted my condition but I still have to fight the daily symptoms as they come. `````i just feel sometimes that I've overcome something there is something new. It's an effort to remain calm throughout

[zadok459]

How's he doing. Is the VA helping him

[zadok459]

I'm also a Vet but from Cape Town South Africa. Parkinson's amongst Vets are not uncommon-it might be the exposure to things such as agent orange that affected us

[JohnPepper]

I decided in 1992 to retire from my high powered job running a large company, because it was killing me. I obviously had to lower my living standards, but I swapped my high lifestyle for a healthier one that helps me to deal with my pd better. I have been able to live Pd medication-free since 2002, and at the age of 83 am now enjoying my life to the full.

[Hidden in reply to JohnPepper]

That's impressive and encouraging. Could you tellus a little more about the changes that you made besides leaving your job? Thanks for sharing!

[zadok459 in reply to Hidden]

After a full life you have many colleagues, contacts, friends etc.To maintain all these contacts is tiresome - so i just kept contact with my closest friends - a more manageable human relations capacity

[JohnPepper in reply to Hidden]

I started a fast walking routine, every second day, slowly building up from 20 minutes to one hour, over a six month period. In addition to that I adopted a positive attitude towards dealing with my Pd, I managed my stress levels by getting rid of anything that caused me undue harmful stress. I also started doing difficult Su Doku puzzles to get my brain active and spent a couple of years learning to speak French, but had to give that up because the lady teaching us had to give up. Last and most importantly I learned how to take 'Conscious Control' of all my movements that gave me problems.

[zadok459]

It's awesome - you must be so proud and thankful. What meds did you use?

[M1tz1]

I'm not a Parky but it was a full-time job caring for one, so I know what you mean, Zadok. Hang in there.

[zadok459]

Thanks for your encouragement. It is just that I sometimes feel occupied or engaged with something I don\t want. I have a military, espionage background - I'm a pilot and scuba diver, Ive written 5 books and made several TV documentaries and was a cyclist and that's all in the past. Now I have to learn to live in the moment regardless. I stil walk 2 kom everyday and visit the wine farms around Cape Town in my car

[janers]

For me it's fear that is my biggest enemy. If I'm calm and in a meditative mind, I can handle anything.

[zadok459 in reply to janers]

To a great extent mine too !! It's difficult to defend oneself against such emotion and it comes when you least expect it. Fear makes you feel without a safety net.

[Kwinholt]

I too feel overwhelmed with my PD at times. I am an ultra runner and work full time and I always try to control everything ... the disease , symptoms, side effects , dealing with family that are alcohol abusers , taking care of Home , bills ect. For the most part I keep a stiff upper lip and just maintain but sometimes I just can’t do it ..... I understand about it being a struggle and I also understand when others say social gatherings are stressful. I always plan my meds so symptoms don’t arise but at a certain point I get self concious and I’m sure it’s more me then anything . It’s very tiring to stay strong ........

[zadok459 in reply to Kwinholt]

That's a heavy burden and I salute you!! Unfortunately we don't stay strong for ever. I had to resign my work as an Intelligence officer, couldn't keep up. I also plan my meds but is not a safe guard. as we are symptom prone due to the nature of the disease or stress. So we remain our own safety net. What is nice about this space is we can make friends who can be our safety net and we for them.

[Kwinholt in reply to zadok459]

Thank you for the kind words and support. Evenings are the most challenging for me as well but I also believe I am always trying to keep moving during the day so I get fatigued and my symptoms creep in. My meds react fast but I take 2 25/100 cd/ld at a time . I truely believe unless you have PD its hard to understand when we try to explain the changes and pain that our body and mind feels. My running and extreme exercise does help my outlook and my stress.

[zadok459 in reply to Kwinholt]

I take 4 25/100's taken in halves every 3 hours - if I make it to strong I get dyskinesia

[Kwinholt in reply to zadok459]

I take my afternoon doses in halves as well with comtran bc I get so tired when I take two at once . So in the afternoon it’s a half every 2-3 hours . So far I’m not plagued with dyskinesia but do get dystonia from time to time but that’s partly my fault if I don’t take my meds on time. How long have you had PD? If had it for 5 years and have been on Cd/ld since day 1 because I could not walk. I also take azilect with my morning dose and I receive Botox injections in my leg and foot every 3 months .

[zadok459 in reply to Kwinholt]

Since 2008. I take the carbilev and urbanol for anxiety

[Kwinholt in reply to zadok459]

One more thing I would like to express is to make sure you have a supportive doctor and one that is a movement specialist, and maintain open communication with them about any new symptoms and concerns. I am very fortunate to have all of that and more with my doctor. He always reminds me that no two PD journeys are exactly alike. But we all know that there are some symptoms ect that we all can compare.

[zadok459 in reply to Kwinholt]

I agree, our journeys differ - even our own from day to day

[zadok459]

I try and accomplish something I can't do daily just to take my focus of the illness and meds - because it's so tiring

[Enidah]

This is a wonderful discussion. I find that if a member of the family or friend tells me about a problem that it's very hard for me not to obsess about it, especially if it involves somebody I love. My brain just won't let go of things.

I wonder if your weakness in the afternoon could be related to your meds not working as well. I find mine definitely don't work as well later in the day. I assume it has to do with eating and not timing them just right or perhaps not taking them soon enough because I forget sometimes to do that.

[zadok459]

Yes If I'm stuck in a thought process it's for the rest of the day -only a night sleep bring a new day